Just What the Doctor Ordered
Therapeutic Recreation for People with HIV
Feeling a bit anxious? Suffering from sleep disturbances? Having difficulty concentrating? Well, maybe a visit to your friendly neighborhood Certified Therapeutic Recreation Specialist can help.
That's right. You can add "CTRS" to your alphabet of health professionals who may be able to help you.
Did you even know that therapeutic recreation was a field of study and that an individual could become certified as a therapeutic recreation specialist? Did it ever even occur to you that your "recreation" might be ailing? Did it ever enter your mind that "healing" your recreation or your leisure lifestyle could result in a more balanced and healthy life?
Therapeutic recreation specialists do not hang shingles in front of their homes. They do, however, work in a variety of settings, such as hospitals, nursing homes, rehabilitation facilities, recovery programs, and community-based organizations. Therapeutic recreation, or TR, is a process that uses recreation to bring about changes in behavior, particularly among people with special needs and problems. The focus of this process is on the use of recreation and leisure activities to enhance the individual's growth and development and to enable the person to take the responsibility for fulfilling his or her own leisure needs.
Therapeutic Recreation and HIV/AIDS
An AIDS diagnosis can affect every aspect of an individual's life, and the impact can be enormous. Even today, when the initial AIDS hysteria has died down somewhat, being HIV-positive can lead to isolation from peers, family, and coworkers. An individual's sense of identity may suffer from changes in lifestyle and familiar routines.
The complex medical and psychological factors associated with AIDS can result in a general neglect of healthy leisure activities. And neglecting leisure is detrimental to the ability to survive. Studies have shown that leisure neglect, loneliness, and the feeling of lacking control over one's own life can result in increased mortality. Many people with HIV disease experience increased anxiety, which itself has a damaging effect on the functioning of the immune system. This can interfere with the body's ability to combat infection and can manifest itself as chronic pain, stress, tachycardia, anorexia/poor appetite, headaches, diarrhea, sweating, poor concentration, and apprehensiveness.
Since the beginning of the epidemic, recreation specialists have been working with people with HIV disease, helping them overcome these and other factors associated with having HIV/AIDS. They have developed programs that use recreation and leisure participation to help people live with the virus.
In the language of the field, the goals of recreation programs for people with HIV disease include decreasing cognitive and emotional stressors associated with the disease; providing opportunities to increase self-esteem and to reduce feelings of stigmatization, isolation, and alienation; assisting in maintaining and enhancing satisfying recreation and leisure experiences; empowering individuals to take an active role in their treatment and care; and offering ongoing recreational activities and meaningful social and interpersonal experiences in a safe setting. The recreation specialist uses a variety of intervention strategies to help people improve their overall functioning and health. These generally include stress reduction, socialization, creative arts activities, volunteer opportunities, educational programs and leisure education and counseling.
A vital component of any TR program -- and one that has been proven actually to enhance the immune system -- is stress reduction. A well-designed stress reduction program should offer both education about the benefits of participating in stress-reduction activities, and the activities themselves. Ongoing stress-reduction activities typically include meditation, yoga, Reiki, massage, acupuncture, exercise, breathing exercises, and visualization.
In a study conducted by the author, individuals were asked to describe their experience participating in an HIV-specific TR program. The overwhelming response was that the TR program provided activities that actually reduced stress, increased the ability to cope with anxiety attacks, and improved the ability to live with AIDS. As one individual put it:
At yoga they taught me to breathe by taking deep breaths. During those moments of stress, breathing is so important. I think I was always tempted to hold my breath in a moment of tension. So now, I make it a point to breathe. And it works. It really does.
Breathing has a lot to do with everything. You know, I was having an anxiety attack and I couldn't breathe, I began to panic. Then I decided to put myself in my yoga class, you know, mentally. And it worked. The attack passed.
Another popular and helpful aspect of TR is providing opportunities for people to take part in social activities in a safe environment, to share their personal experiences living with HIV with other positive individuals, and to develop new social support networks. Social activities can include a wide range of events such as theme parties, group meals, day trips, dances, and educational forums and lectures. Even a comfortable lounge where individuals can congregate and relax can serve as a catalyst for social interaction. The socialization benefits of a TR program can be extensive, as attested by a person who had participated in a one for nearly a year:
I know for myself, life with AIDS can be frustrating at times. I feel overburdened, and a lot of the [recreation] activities I use give me the attention I need. I think a lot of the recreation program gives us back our basic human needs. People want relationships. They want shelter. People want food. People want love. People want interaction with folk who understand. They want to share their life. They want a sense of community and you can have these needs met at recreation.
Another person stated that the TR program provided her with the socialization and camaraderie that were lacking since she left her job. She went on to say:
I just think this whole place [recreation center] has a positive effect on people. There's a marked difference in me. It probably prolongs the life of people with AIDS. I mean, I've seen people just die that haven't had any social support systems.
Another participant agreed:
With the socials, it's just a matter of time before you see people regularly. You develop associations, relationships, friendships, and expectations that I know I'm going to see these people every day. It becomes your family and community.
Several people talked about being comfortable among other people who have the virus. It is especially important that the recreation environment is comfortable and safe. Recreation programs must provide opportunities for individuals with HIV to meet other people in an environment that is free from discrimination and stigmatization. In the words of one of the study participants:
If you look at me you can't tell I have [AIDS]. But I know I have it. When I'm in a room full of people who I know don't have it, and how they feel about people who do have it, I feel very uncomfortable.
Another person added:
I think it's therapeutic to socialize with folks that have the same disease. You're all kind of in the same boat, rowing the same boat. You're all coping with that. It makes the bond a little stronger.
Another person shared her experience participating in social activities. She believed that the recreation program offered more than a safe place.
Coming [to the recreation center] I didn't have to pretend that I was living like everybody else. So that probably adds years to your life. It's very stressful, holding that stuff in [information about one's diagnosis]. You know, all the lying. You have to be a dammed good actor too. Recreation is like a sanctuary. There are no secrets there. Just knowledge and support. It seems to me that people respect each other more at the recreation center than any other place where people congregate. Such as a gym. Or even church. I don't know how one could place a value on peace of mind. I don't think there are many prejudices at recreation.
It is important that people with HIV have the opportunity to express their feelings about living with the virus. A good recreation program includes a broad variety of creative arts activities, including both verbal and nonverbal activities that are adaptable to individual needs and interests. Some people prefer to talk about their feelings; for them discussion groups and socials are fine. Other people may not be ready to talk or may not be comfortable talking openly about their feelings and experience living with HIV. For them, painting, drawing, dance, poetry, sculpting, and drama can provide the opportunity to express their feelings in ways that they do not find threatening. They should have the choice of keeping their work private or sharing it with the group.
One person explained how she "evolved" through the recreation program:
When I first started going I didn't want to talk to anyone. If someone said hello, I said hello back. I wasn't the type that socialized or talked about what was going on in my life. I started going to the poetry workshop and it helped me verbalize, on paper, what I was feeling. Eventually, I started sharing my work with others in the group. Now I'm talking to everyone about what's going on with my life. It really helps to get it out there.
Volunteering can also be a recreation activity, one with tremendous potential for rebuilding feelings of self-worth. The volunteer's attention is taken away from her or his own situation and disease and focused in other, more productive directions. The result is feeling useful again, minimizing the effects of lost employment or feelings of being unproductive.
Volunteer opportunities can range from simple office tasks to running groups to public speaking. Volunteers can apply their own professional skills or explore new experiences and develop new skills. For some individuals it is important to utilize their employment skills. One volunteer described an activity that actually met several needs:
I always wanted to help somebody who needed me. I figured, why not work, I mean volunteer. I can do something. Wherever the agency puts me will be fine. I didn't care. I'm glad to be doing something. I knew I'd be seeing people. I knew I'd be talking to people. Whatever I'm doing will be for people who need me, but I need them too.
Another person said that it was the first job he had ever held where there were no financial benefits. He also said that it was the first job he had ever liked, and because he enjoyed it, he considered it recreation.
For some individuals, being unemployed results in an overwhelming void in their lives. It can be so powerful that they wind up staying home, not getting out of bed, and neglecting themselves. One person said that after she left her job, "I was in a total state of denial. I didn't even go to the doctor. I had this time on my hands and nothing happened. For six months all I did was sleep. I had no purpose." She went on to recount the changes that came about after she got involved with the recreation program and began volunteering.
Volunteering gives me a little push. 'Cause I like to be a little goal-oriented now and then. So it gave me a goal, like when I was working. It gives me a schedule. I come in. I use the computer and make business calls and do office work. I also do a lot of other things, constructive things. Recreation is not all fun and games. I've been doing this work for about a year now.
The participants in the author's study described an environment where people learn by sharing openly and courageously with each other their own encounters with new drugs, clinical trials, physicians, treatments, and diets. Since a therapeutic recreation program creates a learning environment, offering educational programs is a logical next step.
Educational programs should include a wide range of activities, such as learning about the benefits of the services offered (e.g., stress reduction), lectures and forums by specialists (e.g., a lecture on nutrition supplements, a forum on legal issues associated with an AIDS diagnosis), and skill-development activities designed to provide participants with new skills that make them marketable in a competitive work market.
According to one participant in the author's study:
It's a little overwhelming, all the new drugs that keep coming out. I just can't keep up. So I go and listen to the doctors when they talk about the new drugs and trials. They provide all the information I need so that I can make an educated decision regarding what I want to try and don't want to try.
Another participant learned that her doctor was not as knowledgeable in the field of HIV/AIDS as she believed he was. It was through a lecture on nutrition that she learned there were other medications that could help her gain weight. With this information she returned to her doctor and discussed what she had learned. Her attendance at this lecture resulted in an increased appetite and weight gain.
Leisure Education and Counseling
Leisure education and counseling are program activities that should begin the moment a person enters a TR program. This is where the role and value of the CTRS become most evident.
A leisure counseling program for healthy HIV-positive individuals might focus on shifting their identity from their occupation to their leisure interests. Recreation specialists usually encourage people with HIV to continue working as long as they are physically and emotionally able, but they also help them to identify the value and role leisure has played in their lives. Then, when an individual does retire, he or she will have developed meaningful leisure pursuits that compensate for the loss of work and that reduce the stress and isolation of being unemployed.
Leisure education is a process through which individuals develop an understanding of self, leisure, and the relationship of leisure to their own lifestyles. The CTRS aids in the process by helping the individual obtain information about appropriate recreation opportunities and develop the skills needed for various activities, and by providing a variety of recreation opportunities through an organized recreation program. Ongoing interaction with the individual enables the CTRS to make recommendations and suggestions about which activities might be the most appropriate or which activities the person should try next.
Participation in recreation and leisure activities can have a very positive effect on the life of a person with HIV or AIDS. The people with HIV disease who took part in the author's study unanimously declared that the program, "improved my life" and "actually added years to our lives." As one person put it, "I'm adamant about it -- recreation provides life extension." In the words of another, "Recreation gave me a reason to live. Before coming to recreation I was just living. Now, it's sort of given me a reason to live." Yet another said that his recreation program gave him the strength "to carry on, to move forward without stressing out about whether or not I'm on a rapid decline." He went on:
I mean, recreation makes you feel not as scared. And that makes for a better quality of life. It allows you to realize that [AIDS] ain't a downhill race. It's just another day. Realizing this allows you to get on with other things in your life.
There is sufficient evidence that participation in a therapeutic recreation program can improve your health, well-being, and quality of life. So the next time you're suffering from sleep disturbances or feeling anxious or lonely, consider seeking out a CTRS or a therapeutic recreation program. It may be just what the doctor ordered.
Orazio Caroleo is a Certified Therapeutic Recreation Specialist and an Assistant Professor at Lehmann College. He worked at Gay Men's Health Crisis from 1986 to 1997, serving as Coordinator of Therapeutic Recreation from 1986 to 1990.
Photograph by Judy Lawne